A Multi-Site Randomized Control Trial of Family Navigation’s Effect on Diagnostic

Ascertainment among Children at Risk for Autism: A DBPNet Study

Marilyn Augustyn MD1,2; Emily Feinberg ScD, CPNP1,3; Amanda Bennett MD4; Carol Weitzman MD5; Sarabeth Broder-Fingert MD, MPH1,2; Howard Cabral PhD3; Ada Fenick MD5;
Andrea Chu BA3; Jenna Sandler Eilenberg MPH, MA6; Manju Abraham MS4; Marisol Credle MA5; Greg Patts MPH3; Jim Guevara MD, MPH4; Nathan Blum MD4
1Boston University School of Medicine, 2Boston Medical Center, 3Boston University School of Public Health, 4Children’s Hospital of Philadelphia, 5Yale School of Medicine, 6Boston University

BACKGROUND METHODS RESULTS: time to diagnosis, all sites combined

• Significant racial, ethnic, and socioeconomic disparities exist in • Study design: randomized comparative effectiveness trial
access to diagnostic and evidence-based treatment services for • Families were randomized to FN or CM and received the 1
FN (n=127)

Proportion who achieved

diagnostic ascertainment
children with autism spectrum disorder (ASD) intervention or comparator from the time of identified concern to Hazard ratio ITT 0.8

• Family navigation (FN) is a care management strategy designed to 100 days after diagnostic ascertainment analysis =
0.6
CM (n=123)

reduce disparities in access to care, through provision of intensive, 1.41 (1.07, 1.86)
Family Navigation (intervention): 0.4
individually tailored, care coordination and family support • Bilingual and bicultural navigators trained in motivational Hazard ratio with 0.2
interviewing and collaborative problem solving clustering by site =
0
PRIMARY OBJECTIVE • Manualized Family Navigation workbook 1.41 (0.90, 2.20) 0 100 200 300

• 3 core in-person visits; yearly boosters Days to completed diagnostic assessment

To assess the effectiveness of family navigation (FN) versus care • Active outreach to families
management (CM) in reducing time to diagnosis and increasing access • Ongoing individualized contacts in person and via phone, text, and
to treatment services for children at risk for autism spectrum disorder email
RESULTS: time to diagnosis, by site
Care Management (comparator):
CONTEXT & PARTICIPANTS • Clinic-based
1
SITE 2 FN (n=48)

Proportion who achieved

diagnostic ascertainment
0.8
Recruitment Sites: Urban clinics in Massachusetts (n=6 clinics), • Available by phone CM (n=46)
0.6
Connecticut (n=2), and Pennsylvania (n=2) • Contacts initiated by families
0.4
Child Characteristics Parent Characteristics • Addresses needs identified by families
0.2
1
SITE 1 CM (n=53)
Total Total Analyses:

Proportion who achieved

diagnostic ascertainment
0
0.8
(n=250) (n=250) • Kaplan Meier curves to assess time to diagnostic ascertainment FN (n=54) 0 100 200 300
0.6 Days to completed diagnostic assessment
Age, months (SD) 21.7 (3.5) Age, years (SD) 31.4 (7.3) • Hazard ratios – to estimate differences in the likelihood to achieve
0.4
diagnostic resolution between study conditions
Male 70% Hispanic/Latino 29% 0.2
• Included a clustering variable to account for site differences 1
SITE 3
Modified Checklist for Born outside of US 39%

Proportion who achieved

diagnostic ascertainment
0
0.8
0 100 200 300 FN (n=25)
Autism in Toddlers 8.6 (3.1) Race – non-White 84% Days to completed diagnostic assessment 0.6
MCHAT-R score (SD) Referral Language RESULTS: outcomes 0.4 CM (n=24)
Receiving Early 17% Site 1 hazard ratio = 0.93 (0.62, 1.41)
non-English 0.2

Intervention (EI) 44% High school graduate 79% 0

0 100 200 300
services at baseline Married or living with Family Navigation Care Management Days to completed diagnostic assessment
Age started Early 53%
13.18 a partner (n=127) (n=123)
Intervention, months Currently working 53%
Sites 2 and 3 combined hazard ratio with
(7.32) clustering by site = 1.95 (1.86, 2.05)
(SD)
Public insurance 82% Completed
developmental 82% 69%
assessment, 180 days RECOMMENDATIONS
Acknowledgments
• Developmental and Behavioral Pediatrics Research Network (DBPNet). DBPNet is
• FN is effective in improving rates of ASD diagnostic resolution
supported by cooperative agreement UA3MC20218 from the Maternal and Child Health Completed among urban minority, low-income children who are detected as
Bureau, Health Resources and Services Administration, U.S. Department of Health and developmental 87% 75% “at-risk” for ASD in primary care
Human Services. This information or content and conclusions are those of the author assessment, 365 days • We recommend the integration of FN into primary or specialty
and should not be construed as the official position or policy of, nor should any
care
endorsements be inferred by HRSA, HHS or the U.S. Government. ASD Diagnosis 62% 55%
• National Institute of Mental Health (R01MH104355), NIMH’s national ASD Pediatric • However, FN effects appear to vary based on contextual factors
Early Detections, Engagement, and Service Network. that are yet to be defined